In Their Own Words

Elaine Henrion

Thanks for the reply to my first E-mail. Actually, my daughter from Cambridge is helping me during this recovery . I guess the hardest part is the severity of this relapse. I have had over 7 grams of Solumedrol in the past two weeks and am continuing on Dekadron for a short while. I am basically confined to home, moving from the bed to the port-o-potty, to the wheel chair, and now the walker. I am very lucky to have a lap pool and I did get in it the other day. Tomorrow I will water walk again -- no lap swimming yet. My TM experiences are very similar to many of the stories I have read. I have been diagnosed for 15 1/2 years. I was relapse free for over 8 years. I feel certain that many of my ten relapses were caused by ignorance of the medical community. For example, I was given a tetanus shot four months after my initial attack. Within seven days, I had great weakness in my legs. Some time after that I was given solocaine for the removal of warts on my hands. Again, I relapsed. Then one of my sons came down with mono and I relapsed again. My recovery after these relapses varied in degree. However, I was able to get back to a fairly normal life. I played tennis again; I began golfing more seriously. I walked without a limp unless very tired. Fast forward to the fall of l997. Seven weeks before my son's wedding, I relapsed following an acupuncture treatment to relieve the band of pain in my chest. Within ten minutes of the treatment, my right leg was feeling strange sensations. I have no clue what happened to cause this relapse. I am seeing an excellent doctor at Southwest Medical School here in Dallas. We certainly share many characteristics with MS patients. My brain scan is clear; I have no oligloconal bands in my spinal tap. My lesion, at about T-4, is always the same -- no multiple lesions. I will keep you informed of any new things this doctor wants to try. Please share this letter if you feel it would be helpful. Thanks for your encouraging words.

Sheila Fitzell
South Hadley, MA

My name is Sheila Fitzell and on 3 January 96, after 18 years of Federal service, I retired from Westover ARB, MA. My husband, Mike, had retired the previous year and had been waiting for me to reach 62. Prior to TM, my health had been good. I have always been physically active doing step aerobics, walking, dancing, and had plenty of energy to play with our grandchildren who live nearby. We have a total of nine delightful grandchildren. In February of 96, to celebrate our retirement, Mike and I went on a lovely vacation to Hawaii and climbed up Diamond Head (no small feat). In May, 96 we drove to Florida, stopping on the way to visit friends and relatives in Virginia, North Carolina, and Georgia. We had arranged to meet our son, his wife and their four children for a week at Disneyland. The following is what happened.

On 3 June, 96 at Disney World in Florida, I received whiplash on the Thunder Mountain ride. My symptoms were a severe headache, pain at the back of the neck, burning sensation on either side of my hips, extreme pain between the shoulder blades when walking, skin super sensitive to the slightest touch (felt like sunburn). The doctor prescribed muscle relaxant tablets and activator and muscle therapy was prescribed by a chiropractor. The symptoms became worse to include double vision upon waking up and with lower back pain traveling down my buttocks and upper legs. We drove home from Florida to Massachusetts on 24 June 96.

On 26 June 96, I went to my primary care physician about the lower back pain. He ordered a CAT SCAN of my lumbar region. The results were normal! Over the next few weeks, I returned to my doctor with the following complaints: headaches, mainly confined to the top of my head. I felt as if someone was pulling my hair out. I also felt sharp pains in the bones of my face. I had joint pains in my hands (fingers, thumbs, etc.) and elbows. The onset was sudden and the pain would last a day or two and would switch from one extremity to the other. I woke up one morning and was unable to move my right ankle in either direction without extreme pain. As the day wore on, I was unable to bear any weight on that foot without severe pain. I was treated with anti-inflammatory pills and I was better three or four days later.

Because of the continued head pains and tingling sensations down my arms and hands, my doctor referred me to a neurologist who noted diminished reflex responses in my legs. On 31 July 96 he ordered an MRI. I returned to him a week later for the results. The MRI appeared normal. I told the neurologist that I was having some difficulty with my balance when walking. Also, when I was standing at the vanity in the bathroom, I found myself swaying towards the mirror. The neurologist ordered a Sensory Evoked Potentials of the extremities. Unfortunately, I was unable to get an appointment until a month later. At this point, I was extremely fatigued all the time and then on 9 August 96 I became incontinent. I couldn't understand what was happening to me. I had always had plenty of energy and the bladder of a camel! On Sunday, 11 August 96, I had difficulty in walking, my legs felt weak and I began to drag my right foot which felt like pins and needles. On 12 August 96 the foot dragging was more pronounced. I tried to reach my neurologist, but he was out of town, so I contacted my PC physician. He ordered a CAT SCAN. On 14 August 96 I woke up and went to get out of bed to stand and promptly collapsed. My legs were unable to bear my weight. I could not walk without great assistance. I was scared. My right foot is no use at all. I was admitted to Holyoke Hospital and neurological tests were performed. Steroids and bed rest are ordered and then MRI's followed. The diagnosis was Transverse Myelitis. My doctor explained that it was caused by a virus attacking the myelin sheath, etc. I drove myself crazy thinking about where I might have picked up this virus. I really felt helpless as there was no one to talk to about this. Within a few days, I was able to use the walker and with help, go to the bathroom. After about a week, I started physical therapy and seemed to be improving. My spirits were good. Ten days after being admitted, I was transferred to the rehab unit within the hospital. Then I started having PT twice a day. At this point, I was using the walker. A few days later, I became extremely weak, and my muscles fatigued easily and once again, my legs gave way. I was unable to use the walker and needed help to get to the commode. A blood test indicated that my potassium level was extremely low, my electrolytes were out of whack! What a mess. I could barely lift a spoonful of apple sauce. I felt nauseated all the time. I believe that it was probably anxiety. With high doses of potassium, I quickly improved, however, I never got back to where I was in my progression in PT and my energy level was low. Other setbacks included loss of trunk control, I now was unable to sit up without help. Paralysis of the legs, and now the sensation of a tight band around my ribs. I was terrified. Of course, no one said the word paralysis. I referred to it as numbness and when this vice-like grip of my rib cage came, I knew fear! I wondered if the "numbness" was going to continue. I truly was scared. I wasn't in control. A painful rotator cuff and extreme pain in my left wrist and lower arm made me miserable. Pain in the fingers of both hands and also thumb joints. I had several tests for arthritis, and all came back OK. One day I woke up and the front portion of my tongue was numb. There was some spasticity in my legs. The tingling in my hands was worse when I bent my head. My appetite was poor, probably because I felt constantly nervous. My hands and arms felt weak, and my sense of touch was different. Things just didn't feel right. My right hand trembled some. No one was saying anything and I thought, is this what the rest of my life is going to be like? I could not cry while I was in the hospital and I felt like I had to put on a cheerful face for everyone. With my British background, I had to pull-up-my-socks-and-get-on-with-it, so to speak. My girlfriend, Peggy, would either come to see me every day or call me. She would bring me little treats like ice cream sundaes or Italian pastries. Mike would often come during dinner time and one night Peggy and her husband brought pizza and wine (non-alcoholic) and even wine glasses. As much as I appreciated all these little treats, I was not able to enjoy them because of the state of my anxiety. My world, as I knew it, had come crumbling down. I was terribly dependent upon others for my needs. This is a very humbling experience!

7 October 96 I was discharged from the hospital and came home in a wheelchair unable to move even a toe! I was unable to stand or sit up without assistance. I was unable to turn myself in bed. Unable to use the commode without assistance. Our home was a town house with the washer and dryer located in the basement and the full bathrooms and bedrooms upstairs. The dining room was open to the living room. Prior to my coming home, Mike had had to build a 28 foot ramp as there were four steep steps leading into the condo. Another smaller ramp was built to cover three steps leading down into the living room. This made it possible for me to be wheeled down for a change of scenery. Because I could not use the stairs, Mike had removed the dining room furniture and borrowed a single bed. The dining room thus became my bedroom/bathroom for the next two and a half months. What a delightful surprise I had when I was first wheeled into the dining room and saw the pretty flowered sheets and a coverlet on the bed. It looked lovely after the sterile hospital room of the last two months. Mike had gone shopping for these things knowing how much I liked pretty things. I doubly appreciated this act as Mike absolutely hates shopping.

At this time, my legs were hypersensitive and I could not bear the slightest weight on my legs. If my legs or feet came into contact with something cold, I felt a burning sensation. If someone bumped them even slightly when I was in my wheelchair or bed, it would send terrible sensations up my feet and legs. The burning sensation in my legs was constant but bearable, and yet there were times that my feet and legs felt like blocks of ice and were very painful. If my legs were near anything that was metal, they seemed to attract the cold (and still do); all and all, extremely unpleasant feelings. When I first came home, I was evaluated by the physical therapist and tested 0-trace for muscle strength. I started to have PT twice a week and then once a week. After the first two weeks home, I began to see small improvements which has continued. My physical therapist, Karen, was a wonderful, caring and supportive person. Our first attempt to go out in the car to a local store was horrendous. Mike got me into the wheelchair and then into my winter jacket (mistake #1); off we went down the ramp to the car. He then hoisted me up out of the chair, because at this point I was no help to myself, and turned me around so that I could flop into the car. We had to be careful that I didn't bash my head against the door frame. Anyway, after repeating this procedure three more times, we were safely back at home and thoroughly exhausted and thinking that we'd not be trying this again too soon! However, the next time Karen came, we asked her how we could make it easier for Mike and me to go out. The SLIDE BOARD!! I had been doing exercises for my trunk control and once sitting up, I could stay that way. I was able to use the slide board to get from the bed to the chair and eventually into the half-bath room. What a treat that was in terms of a little independence!!

Before I came home from the hospital, my girlfriend, June, who at the time lived in North Carolina, offered to come and help us. What an ANGEL! I don't know how Mike and I would have survived without her. June was appalled when she first saw me as I had lost quite a bit of weight and looked pathetic. She later told me that she had felt overwhelmed at my condition. June has great organizational skills and she literally rolled up her sleeves and went to work! It took several days for her to organize my bedroom so that everything that was needed was on hand. She bought one of those wire vegetable carts on wheels and we filled that with supplies. June tried to coax me to eat by making favorite and tempting meals and many deserts. At first, my heart was not in eating as I felt anxious all the time, and my tongue was still quite numb; food did not taste right. She was always cheerful and kept looking for ways to make me feel better about myself. She would put her warm hands on my feet and push against them, and move my legs and help me with the trunk control therapy. Little by little each week, we saw some tiny improvement. June would have made a terrific physical therapist or First Sergeant!! Each time Karen came, June would make suggestions of what she thought we could do to improve our situation. Karen was very open to these suggestions and had plenty of her own. Mike built me a four foot parallel bar. My first attempt to use it left me totally exhausted. Karen had wheeled me over to it and on the count of three, I would try to pull myself up and try to make a step. I couldn't believe how incredibly weak I was. And, of course, the next day my wrists and/or shoulders were painful. It didn't take much for my tendons to become inflamed. Mike got me some hand and wrist protectors to wear (like for those who have carpel tunnel syndrome) in the hopes that it would help. I just needed to remember not to press with my hands. However, when your legs are weak, you tend to use your hands and arms for support. Just doing five repetitions of any given exercise tired me out. However, Karen, June and my friend, Peggy, gave me such encouragement and hope that I began to believe I might walk again.

After six weeks of caring for me and helping Mike, June returned to North Carolina. I was devastated. Mike was upset, too. She was my lifeline. How were we going to manage. Well, my friend had prepared us. We had lists of menus, and the right kinds of foods, etc. taped to the refrigerator. However, June had also talked to me about how Mike was going to need all the help I could give him as he was worn out from worry and concern. Over the years our roles had been clearly defined with me being the care-giver and nurturer and Mike providing for our family's welfare and generally taking care of us. Mike is a caring, loving person who wants to fix any problems. This TM had him at wits end, and now he had to be care-giver, cook, do the laundry, shopping, pay the bills, fight with the insurance company, etc. He did yeoman's duty! I know I'm blessed to have him in my life. Before June left, we contacted friends who each agreed to come in once a week for an hour to do my leg therapy. This was when I still needed help moving. There were eight ladies (I call them Angels). I did therapy twice a day. Sometimes I could barely get through as I was easily fatigued. It was good to see other people and hear their stories and Mike felt comfortable leaving me to run errands while the "Angels" were here. So we both benefited. They are wonderful ladies; three of them worked full time and still came. How could I not get better with such love. I was determined to pull my weight and pushed myself to do as much as possible to help Mike. However, when the muscles fatigued, there was nothing I could do but rest.

Mike and I settled into a new rhythm, and like others before us in situations such as ours, you learn ways to cope. I would wheel myself into the kitchen and park next to the sink remembering to put the brakes on. Then pulling myself up, I would be able to start to make the meal or do dishes. I could also fold clothes. For our self worth, I think it's important to be able to contribute. At this point, of course, I was still in the leg braces and that allowed me to move along side the cabinets as I could hold onto the counter top for security. There were times when we both "lost it," his from the overburden and mine from frustration. As I started to progress, I told Karen that I had a goal. I needed to be able to master the stairs in order to sleep in my own bed with my husband of forty-three years by Christmas. My grandchildren, who live a few miles away, had told their father that it just wouldn't be the same if Nana and Pa didn't come for Christmas. So, I had another reason for wanting to master the stairs and not wanting to let my darlings down. I prayed for the strength and stamina to be able to climb the steps into their house. We succeeded and enjoyed Christmas day with them.

7 January 97. The insurance would no longer pay for the VNA therapist to come to the house. So, I must go out to a rehab center. I'm anxious about this and wish I didn't have to change. Karen has been so good for me and I've done so well with her. Additionally, I'm worried that I won't have enough energy left by the time I reach the place. The rehab is located inside the local YMCA and in order to reach it, I will need to use the wheelchair to conserve my energy. Once inside, I will use a walker. My fears and concerns were allayed when I met Donna, my new therapist. I was re-tested and my muscle strength was 3+ to -4. Donna gave me new exercises to do including therabands and ankle weights. After my first session there, I used a public bathroom by myself for the first time ... another little bit of independence!

1 February 97. Today, I started to use a walking cane.

18 February 97. I went to Brigham and Women's Hospital in Boston for a third opinion and to rule out the possibility of MS. After the neurologist had reviewed my medical records and performed some of his own tests, he gave us the answer we hoped for. I did not have MS, but TM. Thank,

God. What a relief. During those first few months at home, my emotions were like a roller coaster. We had put our townhouse up for sale and it was nerve wracking. However, we did sell it and closed on 27 May. Three days later, we moved into our new condo which was all on one floor and certainly makes life easier for us both. It has taken the past six months for me to feel like this is home, because at first, there wasn't much I could do. However, as I've gained more energy and stamina, I have been able to put my own touches to the place. It will feel more like home once I have some family gatherings here.

Of all the things I missed the most, it was not being able to participate with my grandchildren. This left such an ache in me. However, this summer I was able to go to some of their baseball games and then in the fall, of course, all three played soccer. They have been for a sleep-over and we've been together for holidays, so things are getting back to normal. I continue to progress and have much more stamina now and only use a cane in unknown territory. I still have some burning sensations in my right foot and the foot often feels like it's asleep. The cold air really makes my legs very uncomfortable, a stinging sensation. So, like Linus, I always have a small blanket with me. However, I'm not complaining. I thank

God every time I stand in the shower, kneel, walk around the kitchen and cook, and walk down the street!

This past 18 months, there have been many prayers said for my recovery; some by people I don't even know. I believe those prayers along with the physical therapy and the caring support of my family and friends has helped me to get where I am today.

A few months ago, I found out about the TMA. Sandy Siegel very graciously gave me time and information and the names of fellow victims of TM in my area. It has been wonderful talking with these people. They have been very kind and understanding and shared their experiences with me.

I started this story with events leading up to my diagnosis of TM. At first my doctor thought the whiplash I suffered at Disney World was a contributing factor, however, my neurologist said no. I don't care; I just want to get well!